Going down

yeah!!! down to 5 mg as of yesterday so far ok. This is the number I've been waiting a year for because I've read the body makes the same amount naturally and the side effects are less once you are down to 5mg or less. Now from what I read on this site I need to slow down or risk going up again. This is such a great site to log on to and read other peoples experiances in fact I comunicate reguarly with a fellow avid bicycle rider and PMR sufferer in the UK I met on this site and it gives us the oppertunity to compare notes on both the bike and PMR.

Thank you for such a great forum and keep smiling there is an end out there

Good, now for the hard part and this is where you really need patience.

The best explanation, apart from what my Consultant told me and he put me on the right track to find out about it all is this extract from a website

\"When you are given corticosteroids, either by tablets or by injection, your own pituitary is fooled into believing that the body is making more than enough adrenal steroids and so it switches your own adrenal glands off. They stay switched off for as long as you take corticosteroids continuously.

If this extends for many weeks or months the adrenal glands shrink(atrophy).

If you suddenly stop taking the corticosteroids, the pituitary gland senses the lack of steroids immediately.

However, if the adrenal glands have shrunk, no matter how hard the pituitary signals, they may not be able to resume normal hormone production straight away. Without any steroids, artificial or your own, you would be in danger of becoming seriously ill.

This is why people taking steroids should carry a steroid warning card. (A card is not necessary if the steroids are being given as a short course

such as for anti-sickness medication.) The card should be carried at all times so that, in an emergency, a doctor will know steroid treatment is being given and that it should continue.

It is also why, at the end of a prolonged course of treatment, steroids are often tailed off by gradually reducing the dose over days or weeks. This allows the adrenal glands to ‘wake up’ gradually so that when the tablets

are stopped they can resume their normal function.

To be safe, the card should be carried in your handbag or wallet for two years after your steroid course has finished. If you have an operation

during this time you must show the card to the anaesthetist. If you need to have any dental work, tell your dentist that you are having

steroid treatment.

Ragnar posted here and on two other sites and his story is on www.pmr-gca-northeast.org.uk

However here it is as I was told. You are now going into a higher percentage drop. Work out the math (good for your brain).

Once down to 5mg, stay there for 3 months, then take a 1mg drop, again three months, then 1mg drop and so on.

If a flare occurs go back up to the one previous, if that does not work, go back up by ones until you are comfortable and then try again.

Remember, PMR goes when it wants to and not when you want it too. Steroids do not cure, just give you a better quality of life.

Good Luck and let us all know how you get on.

I am sorry to take up so much space on this site, but information as to the how, why and wherefore's enable patients to understand better what is happening to them at each particular phase. Information is power.

mrs K

I found that very informative I would like to know if there is anything you can do to improve the working of the adrenal glands ???? I am on a very slow reduction to 4mg at the moment and know my own adrenal glands werent doing what they should as my sodium levels were very low They have improved with the last blood test I keep reading things and try to help myself as much as possible

Mrs G

I am not sure about that at all, I never thought to ask the question. But I bet somewhere on this site is Atrophy of Adrenal Glands, if not, perhaps Google or the NHS website.

Sorry I cannot be more helpful.

mrs K

I forgot to log in